So where have I gotten to three years post injury?
On some hazy day in April of 2006 I woke to discover my legs would not move. Major surgery weeks later after antibiotic therapy was initiated but seen not to be effective on it's own. Six Months over three different hospitals. Could not sit up at all - would flop over at the waist like a rag doll. Lifted from bed and chair with sling and hoist. No movement below lower chest, no pain (after initial surgical incisions) Catheterized. Left rehab hospital in about that state with only the slightest movement returning to my legs - which I decided not to share with hospital staff because of a disinterested if not negative attitude. Two doctors dryly stated that I would never walk again.
Returned home at the end of October of 2006 in about that state. Hospital bed in the living room, hoist, etc. Community health care sent me an in-home physiotherapist who assessed me and felt some flicker of movement stating "we can work with this". In January of 2007 I suddenly realized that I sat up with some abdominal control while reaching for something. As the inflammation continued to recede, the mobility slowly increased but the amount of neurgenic leg pain increased with it. The bad came along with the good. Post injury, through this period, I had massive spasms where one leg or the other would begin jerking uncontrollably, one or the other (never both at once, hmmmm?) and the would be violent and last sometimes for hours.
Started physiotherapy 4 times per week at my local community hospital (hospital number four). After a few months one gym session was replaced with pool therapy.
Got fed up with bowel treatments and catheter bags after the first year and got rid of them. Those functions have returned to near normal.
Continuing physiotherapy over the next few years, strengthening whatever muscles had returned under my command. During this time I was fitted for long braces (KAFO) which had a locking hinge at the knee. Put them on and wobbled in the parallel bars further strength and balance. Progressed to braces below the knee (AFO), with a limited hinge at the ankle. Each progression took about a year (a year from exercises on a mat to a sit-to-stand frame, another year to progress to walking with long braces, another year to walking with the short ankle braces, to now walking distances with braces and walker.)
Paralysis is only some 50% of the problem. The other major problem continues to be the intense and constant neurogenic leg pain (pins & needles/burning). The spinal nerves are permanently damaged and are continuously sending the signal that something is wrong and to stop it - only it can't be stopped.
Drugs have little or no effect on this particular type of pain.
Spasms have reduced to a few mild ones, usually late evening and not lasting for very long.
BoTox therapy could not be felt internally in any way but did improve my gait as the stride seemed to be longer and better controlled - that is, foot went right where I wished to place it rather than perhaps drift a bit or pull in to center. BoTox may have lost it's effectiveness about 3 weeks prior to my 4 month post-injection assessment and probable repeat injection.
In spite of the intense core exercises I still feel as if My middle is wrapped in a large Theraband (elastic band). Muscles are very tight and don't want to give at all. Doesn't hinder any motion or breathing but feels uncomfortable.
Muscular control has returned to much of my legs but the dorsiflection (lifting my foot off of the ground with heel in contact with the floor - or cannot tap my foot on the floor as I can push down but not pull up)
Post injury the muscles or back were altered such that I developed an intense sciatic nerve pain which manifested itself as an intense pain in the left seat/butt/hip joint area, making it hard to sit for any length of time. Turning on my side or back doesn't help much as even each pulse of circulating blood causes the spot to throb. The pain often manifests itself in the left heel at the same time. The most recent core exercises seem to have helped with this pain as it feels less intense, and occurs less frequently. Some days good, some not so much but can't correlate the change with 'post-exercise' fatigue, length of time sitting, weather, barometric pressure etc.
So in summery, I went from a catheterized rag-doll stuck in one position to now where I can turn to sleep in any position on my bed, dress myself and leave home for appointments without assistance. While my neurogenic leg pain remains intense and very distracting, other symptoms have improved immensly and I can walk with a fairly normal gait with the assistance of a walker. Distances are limited but are improving week to week. Transfering to a car or van is no problem as I can stand and swivel into the seat and lift my own legs into the car under their own muscle strength and control (no transfer board). Lyrica medication does not seem help the nerve pain much, if at all but one of the side effects is weight gain and I believe that side effect may be manifesting itself on me, which is problematic as I'm a big guy anyways.
So, I'm walking ever increacing distances but nerve pain remains the most distracting symptom.